Thursday, February 3, 2011


The weather was...not.  Two snow days, two stircrazy kids, three stircrazy dogs - I did diligently work from home...Yawn. Non event. Sorry for the ramp up. 

Now back to the meaty stuff:

There was a discussion over here last week & again on Monday about how we characterize our kids with special needs.  I remember reading various discussion boards after learning about my girl's heart & genes and being, well, unimpressed.  They were all so sure of themselves.  "Wouldn't change a thing!  God's Blessing! Specials Parents for Special Kids! Yeah for us!"  Lots of exclamation points.  I'm not sure I'll end up in a coherent static place, but this was the comment I left.  By way of context, they were also talking about "different, not worse" (in terms of autism and the deaf culture), though I think DS's slogan is "More Alike Than Different". 

...The crowds on the message boards that wouldn't change a thing about their child and that DAMN Holland poem on one end of the spectrum and the simple facts that my girl (who has down syn) does have cognitive delays, did require open heart surgery, and will always be immediately recognizable as a member of her club on the other end. The lure of "different not worse"* is tempting. I desperately want her to be accepted and loved for who she is. And who she is is literally programed at the cellular level. Absent that extra chromosome she would be a different person - it's that simple. But absent that extra chromosome she would not have had two surgeries (w/the 3rd scheduled), she would not be at higher risk for leukemia & early onset alzheimers, and we would not be talking IEPs.... How do you love someone so unreservedly and yet object to their cellular makeup?

*I actually wrote "different, not better".  I find this wildly amusing. 

I think Robert Rummel-Hudson does a fabulous beautiful job sorting thru what it means to love our kids and dealing with their issues, whatever they may be. Certainly more eloquently than my infantile stumbling efforts here.  Because, though I struggle with the concept, my gut check response is usually to end up shrugging and moving forward with my day. Usually, but not always. Stoicism doesn't necessarily make for exciting reading (Dick Francis references aside).

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